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Dutch newby. B12 deficient. MTHFR C677T. Best approach?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Xara, Dec 7, 2012.

  1. Xara

    Xara Senior Member

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    Hello dear reader!

    First of all: sorry if I'm asking the patently obvious, or the thing that has already been dealt with endlessly. Please know that I have been Googling for days and searching this site, but right now I simply can't see the wood for the trees anymore. Sniff. I'm spinning.

    As English is not my mother tongue and as I have difficulty understanding and concentrating (due to bad health), I'm hoping somebody will be able to help me to get me on the right track, to help me to some clear answers.

    First let me introduce myself:
    I'm a Dutch woman, with health problems for over twenty years. To name a few: fatigue, aphasia, ataxia, tingling sensations in arms and legs, muscles ache. ME/CFS.
    Feb 2012: B12 deficiency. (B12: 119).
    August 2012: Dientamoeba fragilis. Unclear gut probs: biliary colic or infection.
    November 2012: MTHFR C677T, heterozygous.

    Now. I started with hydroxob12 injections in February, they were doing me some good, but ever since my gut problems in August things have been deteriorating. Fatigue is worse, nowadays even putting a jeans or some socks on makes me short of breath. Tingling is back. I'm bumping into more things than having experienced for a while. Etc.

    Standard procedure in The Netherlands is to treat B12 deficiency with hydroxoB12 injections.

    I've read on a Dutch forum that some people had gotten some improvements when injecting themselves with methylB12 alternating with either hydroxoB12 or adenoB12.
    MethylB12 and adenoB12 have to be ordered abroad though, they are not registered in my country.
    Because I am experiencing deterioration, I thought: maybe I should try methylB12 and adenoB12 myself.
    So I started to search the internet for more information - phew, wow - and all of a sudden I find myself in a swamp of medical technical discussions about things I'd never heard of before. Methylation for one. :)

    Some lab outcomes, September 2012:
    K (potassium): 4.3 nmol/l
    Calcium: 2.48 nmol/l
    Ferritine: 99 ug/l
    Vit D (25OH-D3): 85 nmol/l
    Folium acid: 41.5 nmol/l

    I am/have been using:
    - Vitamine D: 20mcg a day, taken with oil.
    - Injections: 1 mg Hydroxob12 twice a week.
    - Orthica Co-enzym B-complex: 1 tablet twice a week, taken with food. (Ingredients: B1: 5 mg, B2 (riboflavin-5-phosphate): 5 mg, niacin (inositol hexanicotinate): 50 mg, B5: pantothenic acid (calcium-D-pantothenate): 50 mg, B6 (pyridoxal-5-phosphate): 5 mg, calcium methylfolate (Metafolin®): 200 mcg, B12 (adenosylcobalamine): 25 mcg, biotin: 12 mcg, choline bitartrate: 50 mg, inositol: 50 mg, PABA (para-aminobenzoic acid): 15 mg)
    - Clioquinol (against Dientamoeba fr.): 2 treatments of 10 days each.
    - Started with oregano oil in November: ADP Biotics in order to kill the Dientamoeba and any other un/wanted minions in my body (duration: 6 weeks in total: two weeks 4 tablets a day, 2 weeks off, and again 2 weeks 4 tablets a day - coming Monday will be my last day)

    I was planning to use:
    - Orthiflor plus - probiotics
    - Orthica L-glutamine 500.
    - Injections: 1mg methylB12 and 1 mg adenoB12 (each once a week)

    Okay, please bear with me, here are some (stupid?) questions:
    1. Is it possible hydroxoB12 is not working for me because I'm having a genetic mutation (C677T)?
    2. What's the effect of C677T on being under- or overmethylated?
    3. How do I notice under- or overmethylation? (Perhaps someone has a link?)
    4. Is it wise for me to take the methylB12 and adenoB12 injections or would 'sublingual' tablets work just as fine for me? Or should I use both: injections AND tablets? If so: any idea how much?
    5. Oregano oil is a natural antibiotic, so I've learned, and is known to give problems with iron absorption. Is it possible to have an an iron shortage after using oregano oil for two weeks?
    6. Should I go ahead with the probiotics (Orthica: Orthiflor plus)?
    7. Is Orthica L-glutamine 500 okay for me?
    8. Are there any other supplements I should be taking?

    Thanks for your patience, thanks for reading, thanks for any answers. :)

    Edit, addition, after giving my mind one hour of peace:
    Maybe, probably, 8 questions is too much, but maybe, dear reader, you could answer this one question, which was coincidentally already in the header: what do you think would be the best approach for me?
    Thanks!
    ggingues likes this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Welcome to the Forum.

    I looked at how much Vitamin D you are taking (20mcg) which I figured from this website ( http://www.robert-forbes.com/resources/vitaminconverter.html ) to be 800 IUs, thats not very much. Do you have your blood levels checked? Vitamin D is a hormone and Immune Modulator, and is very good for many things. Cancer prevention...I would look into taking more Vitamin D. Your 85 nmol/l is equivalent to 34 ng/ml (according to this website: http://www.endmemo.com/medical/unitconvert/Vitamin__D.php , which is on the low end according to Dr Mercola and probably other Drs who have an online presence. I think he suggests a value of 60 to 70 ng/ml.



    GG

    PS Sure someone else will jump in here soon.
    Xara likes this.
  3. Xara

    Xara Senior Member

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    Hi ggingues!

    Thanks! :)

    O, I'm sorry, I didn't realize units w/could differ internationally. But hey, great invention, these converters! :)

    Em, I'm not sure what you mean with having blood levels checked... Are you talking about whether I visit the doctor regularly in order to have my vitamin levels checked? Em, no. In my country blood levels are normally obly checked when the doctor suspects something to be wrong (too low/too high), based on your complaints - no routine checks. So I did not have my blood checked regularly, but now that I have to inject cobalamin on a regular basis, it is indeed advised over here to get your blood checked at least once a year, well at least on B6 and folium acid, if I'm correct, because these are important in B12 deficiency. I could ask for vitamin D then without a prob...
    Apart from last September vitamin D was checked in January 2012: 74 nmol/l, and a couple of weeks later as well: 79 nmol/l. After learning those values I increased the daily dose from 15 to 20 mcg resulting in the 85 in September.

    Really? Gosh. Doctors here are content when you reach the (Dutch) minimum value of 80, so I was quite content with my 85 until you brought this up. I'll definitely look into it. Now that you've mentioned it I think me just crossing the minimum should not be my aim. Definitely!

    Thanks ggingues!
    ggingues likes this.
  4. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Not a problem, it's probably just one small piece to our puzzle(s). Hopefully you can get it tested upon request. You might want to try boosting it in advance, if you know what your level was when you were taking a certain amount. Then you could see what the increase does for a future value.

    I started off taking about 2,000 IUs and noticed about a 10 ng/ml increase per 1,000 IUs when I blood levels were low (30 to 60?, couple of years ago now). I found it harder to get higher without larger doses. I was initially concerned with toxicity, but upon reading more materials, I think this concern is over blown. I know take about 5,000 IUs year round!

    My current value is 113 ng/ml and my Dr suggested that I take less for a few weeks, which I did and then started back up. I would rather not catch a cold this winter. think I was only fluish for 1 day last year. Some Drs take 50,000 IUs upon feeling ill, they also do heavy doses of Vitamin C.

    GG
    Xara likes this.
  5. Xara

    Xara Senior Member

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    Yes, I'll do that. It'll be interesting to see what the increase will be compared to the extra intake. Any idea how long it takes before an extra intake will be visible in blood? To put it differently: how many days should be between higher intake and a new blood sample, at the least?

    Interesting.

    Wow, that's a lot! Thanks for mentioning it, now I have some idea of the increase possibilities.
    Thanks, ggingues!
  6. Xara

    Xara Senior Member

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    Okay I have been doing some reading this weekend and for those interested (my thread has been read 188 times and there were 5 postings, it's hard to believe it's just me and ggingues here :) ) here's what I think I'll do:

    I'll buy:
    1. Solgar Metafolin 800mcg
    2. Enzymatic Therapy 1mg
    3. Anabol Naturals, Dibencoplex
    4. Now Foods, Modified Citrus Pectin
    5. Doctor's Best, Best L-Carnitine Fumarate

    I won't change the hydroxoB12 injections, so twice a week 1mg hydroxo.

    Addition:
    I'll start with 1 (people with MTHFR mutations need methylfolate so I've read somewhere), on a daily basis.
    Then after a couple of days (3-5 days) I'll add 2 (hopefully this methylB12 and the adenoB12 of 3 will improve the symptoms of my B12 defiency), so then I'll be taking taking daily 1 and 2.
    After taking 1 and 2 for a couple of days I'll add 3. Etc.
    I'll start slow: a low dose of each in the beginning.
    Each time I'll see (and feel) how my body takes it.
    When I've finished the first round successfully (so taking 1,2,3,4, and 5 for a couple of days and all goes well), I'll increase the dose of 1, taking 2,3,4 and 5 at the beginning dose.
    After a couple of days: 2 will also be increased. Etc. I'm sure dear reader, you get the picture: I'm as cautious as possible.

    I don't know yet what my beginning dose of each will be.
    And I don't know yet what my aim will be.
    ...
    Em, well, yes: to have a long, healthy and active, superactive life. :)
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sounds good...but I'd be even more cautious and add in more days between starting each new supplement.

    Speaking from the experience of adding them in too fast!

    Sushi
    Xara likes this.
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I don't know how long it takes, I suppose a google search would probably turn up that answer, but I think people increase by a certain amount, and then have their levels checked at least 1 month, probably 3 months later. Unless you are have blood drawn all the time for some other reason.

    GG

    Just wanted to add if you buy the supplement, take it with fats, get a gel form, not powder in capsules. It's better absorbed that way.
  9. Xara

    Xara Senior Member

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    Hi Sushi! Good point, you've convinced me, I think you're right: 3 days is too short for reading body signals in case of a deterioration. Seven days is better, presumably, but I'm impatience of course (aren't we all? :) ). I'm working on a schedule at the moment, and after having read your contribution I have written off the 3 days' period, it'll be either 5 days or 7 days, I don't know yet, I'll let you know.
    Thanks!
  10. Xara

    Xara Senior Member

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    Hi GG,
    No, I don't seem to attract vampires that often. ;)
    I'll raise one month, probably two months, in advance. Thanks.

    By the way, your words have sunken in: I have already raised my daily dosis (did it the morning right after having read your first remark about this): instead of taking 4 I'm taking 5 tablets now (you'll probably laugh at that low dosis but I feel like a real daredevil, hahaha). Once I'll get used to the idea of me being just in the lower range of normal D levels I'll prolly increase even further.

    At the moment I'm focusing on my B12 problems and getting the methylation process working right (I've concluded at some point during my googling and reading in the last three days that, thanks to the C677T mutation, I'm undermethylated). Nevertheless, vitamin D certainly got my attention thanks to you. So once I have finished my schedule of tablet intake, I'll decide how much vitamin D I'll take in future. Might need a different brand too (I'm taking a cheap 'own brand' of a cheap drugstore ATM). What's your opinion? Is there a noticeable difference in brands as far as vitamin D is concerned?
    ggingues likes this.
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I have tried a few different brands of Vitamin D, the only thing I (significantly) noticed was whether it was a gel (best) or capsule (not as good). I don't think I new the connection of taking it with fats, which helps the body absorb, so perhaps if you take a capsules, just make sure to take it with some fatty food and/or fish oil or whatever kind of oil you might use.

    GG
    Xara likes this.
  12. Xara

    Xara Senior Member

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    Hi again dear reader!

    I thought that some of you may be interested in the approach I decided to try.
    Here I’ll tell you which brands I bought, my schedule with the daily intake, things I’ve come across, and things I took into consideration. Hopefully some of it may be of any help to you, especially those who have a medical situation similar to mine and who’d like to get an idea or who’d like to compare their starting dose with mine.

    Last two weeks I’ve studied
    - the protocol of Freddd and some of his remarks in several threads,
    - the protocol of Rich of 2012 and an earlier one and some of his remarks in several threads,
    - the MTHFR C677T Mutation: Basic Protocol of Dr. Ben Lynch and many of his remarks on his website and
    - some blogs of a Dutch blogger (Dutch language), and
    - many other sites.

    Here’s what I bought, here’s what I’ll be using myself:
    1.Modified Citrus Pectin: Now Foods Modified Citrus Pectin 800 mg 180 Vcaps
    2. Potassium: Now Foods, Potassium Gluconate 99 mg 250 Tablets
    3. Methylfolate: Solgar folate as Metafolin 800mcg 100 tablets
    4. Methylcobalamin: Enzymatic Therapy 1mg B12 infusion 30 tablets
    5. Adenocobalamin: Anabol Naturals Dibencoplex 10,000, 30 capsules
    6. Curcumin: Now Foods, Bio-Curcumin Phytosome, 60 Vcaps (500mg)
    Available at iHerb.

    I’ll explain the why of those specific supplements later but first a remark about Modified Citrus Pectin:
    I regretted my purchase the minute I stumbled on to an editorial opinion of Alternative Medicine Review called: Is Modified Citrus Pectin an Effective Mobilizer of Heavy Metals in Humans?
    I quote: “In this writer’s opinion, what we are left with are three published studies that are replete with significant omissions and questionable math, and with no reliable evidence that modified citrus pectin is able to block the absorption of heavy metals or reduce heavy metal burden in humans. Unless and until such documentation is forthcoming, it may be to the benefit of your patients to use agents whose safety and efficacy in reducing human heavy metal burden is clearly, and more satisfactorily, documented.”
    Since my regretted purchase of MCP I discovered that the body can only remove a small amount of toxins a day (via sweat, urine, feces) and that there are cheaper detoxers.

    Why a detox?
    Thanks to the MTHFR mutation I’ve got it’s more difficult for me to get rid of toxins.
    Also: I’ve got amalgam fillings. I know, I have to get rid of them, but not now, now I’m having serious physical problems related to B12 deficiency that I wish to deal with asap.
    Also: I’ve learned that it’s better to start this methylation thing going with a body and gut that are in the best possible shape.
    Also: methylcobalamin (mb12), which I’ll be using a lot, can react with mercury and hence pass the brain-blood barrier, you’d want to avoid that - I read on the internet. (Though Freddd seems not to be convinced (big) harm is being done, so I've read, and hey I certainly do respect Freddd.)
    I considered it’d be best to keep the levels of toxins in my blood as low as possible and to make sure there are substances in my blood that’ll grab (and connect with) any toxin they meet before it can get to my precious mb12 and hence into my precious brain.
    I have learned that a small bundle of fresh parsley or coriander, half a lemon, raw garlic, cayenne, watercress, rucola salad, borecole, and spinach are excellent detoxers. So I use them (and have been using some of them already) in a smoothie on a regular basis.
    I have learned that mercury is very fond of bonding with selenium, it’s a strong bond too, and what do you know: good tasting raw Brazil nuts contain a lot of selenium. Two raw Brazil nuts a day will help taking care of the mercury that's floating freely in my blood, I decided. (Do no take more than 3 Brazil nuts or you’ll get an excess of selenium which is toxic.)
    Taking a sauna 1-3 times a week is helpful too, I plan to do it once a week.
    So I could have saved me some money. Now that I’ve bought the MCP, I take it daily, but I’ll do the other things as well.

    Why Potassium? Why Now Foods?
    It seems potassium is a very important cofactor.
    Now Foods: it’s a good brand, people seem to be satisfied with it.

    Why methylfolate? Why Solgar?
    Thanks to the C677T mutation I’m not able to produce enough methylfolate, and thus my homocysteine level is too high (and because of that my methionine level is not as high as it could and should be).
    I do not wish to take a product that supplies methylfolate as well as mb12, because I want to be able to adjust each of those two to my personal need.
    Solgar seems to have a good price quality ratio, at least that’s what I’ve read.

    Why methylcobalamin? Why Enzymatic Therapy?
    I'm B12 deficient. My body has an absorption problem when it comes to B12 (making my problems with getting enough methionine even worse). I am injecting myself intramuscular with hydroxocobalamin twice a week 1 mg, but after a promising start my physical situation deteriorated. I’m experiencing more problems in my nervous system for instance.
    So I’ll try taking mb12 twice a day, melting the tablets under my tongue for at least 45 minutes.
    The brand Jarrow methyl B-12 seems to have changed for the worse recently, according to reports here and there, so, for me, one acceptable alternative left: Enzymatic Therapy.

    Why adenocobalamin? Why Anabol Naturals Dibencoplex?
    I decided on adenob12 for the same reason I decided on using mb12: deterioration. I’m experiencing being more fatigued. Hopefully adenob12 will be helpful in my muscles.
    People report that Anabol Naturals Dibencoplex is good and strong.

    Why curcumin? Why Now Foods Bio-Curcumin Phytosome?
    Curcumin is advised for people with a MTHFR mutation. It’s a detoxer and it’s a blood thinner. Because my homocysteine is elevated the risk for developing blood clots is increased.
    Why Now Foods? I liked the promised increased absorption and bioavailability.

    I think six extra supplements is quite enough at the moment. Perhaps more will follow after a while, when I’ve improved.

    I did not buy the L-Carnitine Fumarate. I have read somewhere that carnitine does not have an effect on women, only on men (if anyone can contradict that please tell me) and that fumarate has some disadvantages (sorry, don’t remember where I have read that).
    Apart from that, I don’t regard it as essential to me as the other supplements at the moment.

    I don’t like supplements, I prefer trying to achieve the same by eating healthy.
    My diet during the last couple of months: no gluten, no dairy apart from yoghurt, no alcohol, green smoothies for breakfast and lunch. Just telling this to give you an idea. My smoothies contain organic cold pressed coconut oil and organic virgin olive oil. Also: chiaseed and a thin slice of fresh gingerroot (too much of ginger may cause problems btw). Every now and then I add grinded flaxseed or sesame seed or hempseed. Sometimes I add cocoa powder (no sugar), cinnamon, lemongrass or cardamom. Fresh herbs as well, naturally. In the evening after dinner I snack a handful of raw nuts (macadamia, walnut, hazelnut, almond) as well as my two Brazil nuts.
    BTW gingerroot is a detoxer and a blood thinner.

    Last week I started with probiotics.
    I stopped the Orthica co-enzym B-complex, because I was afraid the tingling sensations I felt in my limbs lately could have been caused by a recent unexpected excess of B6. I did not take that many tablets but I read somewhere that B12 deficiency may pile up B6… So I thought: let’s stop with that B-complex, let's improve my methylation cycle and my folate cycle first, and then, later, after a couple of weeks I’ll add the B-complex again (containing B1, B2, niacin, B5, B6, Metafolin®, B12, biotin, choline bitartrate, inositol, PABA, see my first post).

    My planned schedule, the first 5 weeks:
    (BTW an asterisk, a * means: added or changed)
    (I give you this schedule of mine, because maybe one of you is interested in my starting dose. It's nice to be able to compare. I know it is difficult thinking and reading when the brain is foggy.)

    Prelude:
    1. MCP*:
    - 3 days: 3 times a day: 2 capsules (drink lots of water)
    - 4 days: 3 times a day: 3 capsules

    After learning that MCP was based on just a few studies, and knowing that for the last couple of months I have been using a lot of detox herbs and veggies, I thought on the sixth day: let’s move on to week 1 and at the same time increase the dose of MCP to 4 capsules 3 times a day.

    Week 1:
    1. MCP: 3 times a day: 4 capsules
    2. Potassium* (99 mg in 1 tablet): 2 times a day: 1 tablet with meal
    3. Solgar folate* (800 mcg in 1 tablet): 2 times a day: ¼ tablet with meal

    Week 2
    1. MCP: 3 times a day: 4 capsules
    2. Potassium: 2 times a day: 1 tablet with meal
    3. Solgar folate: 2 times a day: ¼ tablet with meal
    4. Enzymic therapy* (1 mg mb12 in 1 tablet) 2 times a day:
    - 3 days: 2 times a day: ½ tablet between cheek and gum: 60-120 minutes
    - 4 days: 2 times a day: 1 tablet between cheek and gum: 60-120 minutes

    Week 3:
    1. MCP: 3 times a day: 4 capsules
    2. Potassium: 2 times a day: 1 tablet with meal
    3. Solgar folate: 2 times a day: ¼ tablet with meal
    4. Enzymic therapy: 2 times a day: 1 tablet between cheek and gum: 60-120 minutes
    5. Dibencoplex*: 3 times a week: contents of ½ capsule between cheek and gum: 60-120 minutes

    Week 4:
    1. MCP: 3 times a day: 4 capsules
    2. Potassium: 2 times a day: 1 tablet with meal
    3. Solgar folate: 2 times a day: ¼ tablet with meal
    4. Enzymic therapy: 2 times a day: 1 tablet between cheek and gum: 60-120 minutes
    5. Dibencoplex: 3 times a week: contents of ½ capsule between cheek and gum: 60-120 minutes
    6. Curcumin* (500 mg): 1 tablet a day with meal

    I’ll stay low with curcumin for I am already using gingerroot and I do not want to make my blood too thin. Besides curcumin is said to have an effect on iron, the more curcumin you take, the more likely you get an iron deficiency.

    Week 5:
    1. MCP*: 3 times a day: 5 capsules
    2. Potassium: 2 times a day: 1 tablet with meal
    3. Solgar folate: 2 times a day: ¼ tablet with meal
    4. Enzymic therapy: 2 times a day: 1 tablet between cheek and gum: 60-120 minutes
    5. Dibencoplex: 3 times a week: contents of ½ capsule between cheek and gum: 60-120 minutes
    6. Curcumin: 1 tablet a day with meal

    For my own purpose I have written out thirteen weeks. If someone whishes me to give them all thirteen here, please say so.

    Of course, this is not a tight schedule; the moment I notice side effects I’ll lower the dose significantly or stop taking the specific supplement for a week or two (depending on the dose I took). I perfectly understand that supplementation does not have to be done daily.

    If I don’t notice any change I’ll keep increasing the dose (every 5 weeks) very slowly, especially where Solgar folate is concerned, until I notice my body is responding to it, and then I’ll weigh what to do, depending on the signals my body is giving me.

    Increasing the dose means in my schedule increasing the dose of one specific supplement at a certain time: every 5 weeks. When raising one, the other supplements remain the same.
    Potassium and Solgar folate I raise together, it’ll be hard to take too much potassium in my case (my kidneys work fine and I don’t use much salt), I expect the Solgare folate to give negative effects sooner or later. I’m careful with Solgare folate, I’ll raise with 1 or merely a half (½) tablet max, I’ll keep in mind what Dr Lynch said: “The issue is methylfolate can cause more harm then good if not started at the right time or tapered up slowly in amount”.

    I’ve read the side effects of methylfolate will go away within 24 hours upon stopping or reducing the dose, and in case I’d like to make them go away faster I’ll have to take 50 mg of Niacin or vitamin B6. Or a capsule of Curcumin (that’s 500 mg in my case) three times a day to help quench inflammation. Dr Ben Lynch about Methylfolate Side Effects: link.

    I know that once the methylation starts working the way it should be, once new red blood cells are being made, once the body starts getting rid of toxins in a more effective way, and, very important, starts repairing the damage done, there may be a higher demand for iron, copper, zinc, magnesium, B6 and what not.
    My starting values are not bad, to Dutch standards anyway (I don’t know the international standards) and I’ll keep a close eye on my diet, so I don’t expect a shortage very soon.

    By the way I forgot to mention in a previous posting that if anyone is considering to use organic oregano oil to get rid of parasites like the Dientamoeba please use an iron supplement at the same time.

    Well, that’s it. I hope the above will be of some use to someone.
    If anyone has something to add please do.

    I think I have come a long way, in my first post I was spinning. It took me some time, I know there’s still a lot to learn out there. And I’m simply in awe with the knowledge of some here at phoenixrising.me!

    It may well be (some of) the information in this post is incorrect. I’m but a buzzing newbee. Please, fellow newbee, check the facts yourself before following my footsteps.
    In case anyone wishes me to explain the theory behind the information I provided: well, you’re free to ask of course but I have to warn you: I’m barely capable of understanding it, reproducing it is an entirely different matter. :) Sorry, please follow the links I provided or ask elsewhere on this great forum.
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